Cincinnati Trip #1

Well, we made it home safe and the trip went off without a hitch for the most part.  Joshua handled the traveling so much better than I expected, he is such a trooper!  He was scared of the crowds and the TSA experience to start out with.  We made it through Security with Joshua's IV fluids and medical supplies with surprisingly little trouble and Joshua perked up once we got on the train to the concourse.  We were able to pre-board the plane and Joshua was seated comfortably in a window seat where he promptly fell asleep while everyone boarded the plane and took off.  I couldn't believe he slept through the take off and most of the plane ride!

 

While I was checking into the hotel, I assumed Joshua was crawling on the nearby couches since this is a favorite past time and I could see the top of his head.  When I rounded the corner of the couch, this is what I found:

 

And, boy did he have fun seeing himself in his first full length mirror as soon as we entered our hotel room!  Within a few hours we were being whisked away to Aunt Karen & Uncle Jeff's house for a lovely evening.  Joshua was able to play outside in a backyard and we were able to enjoy a yummy home cooked meal.  It's extra nice to have family close by at our new home away from home!

The next morning started out early since the shuttle to Cincinnati Children's left at 7:30 to make our 8 am appointment.  Crystal, our do-it-all Clinical Coordinator, met as the door and led us through the maze that is CCHMC.  I was supposed to bring a urine sample and had been sent plastic bags that are supposed to stick around his little wee-wee inside the diaper.  Naturally, Joshua wanted nothing to do with this and kept pulling them off before I could get the diaper secured.  He also wasn't complying with supplying a stool sample, that is until the doctor decided to do a rectal exam to collect the sample.  Joshua promptly let one loose thirty seconds later and we finally got the urine sample at the same time, too.  Smart kid.  

Dr. Cole and his staff assured us Joshua is an excellent candidate for Gattex, they fully expect he will be able to tolerate more feeds, his stools will be thicker, and his appetite will naturally increase due to his body being able to absorb more nutrients.  He gets to start the drug next Wednesday, 8/27 when we go back for our next trip since this week's trip was the screening visit.  Joshua had some blood drawn and then had to make it through an EKG before it was time to head back to the airport after a quick lunch in the cafeteria.  

 

Joshua fell asleep on the ride back to the airport and I managed to get him out of the car seat, hold him on my shoulder, and navigate curbside check-in.  The little guy only slept for 5 more minutes after I found a nice comfy counch for him.  Then it was time to chase him around the concourse, riding escalators & elevators, and trying our best to keep him from running in front of every single person in the airport.  

Oh how I wish I could say the flight back was as uneventful as the day before.  In true Joshua style, he pooped twice before the fasten seatbelt sign was off.  The first time the nice gentlemant next to me allowed me to change him right there in the seat.  The second time... well, let's just say the first sign I had was finding poop on the seatbelt - never a good thing.  As I trekked all the way to the back of the plane carrying Joshua and getting poop on my arms, I contemplated how I was going to change his entire outfit in the airplane bathroom.  Ever tried to lay a child down in a lavatory?  Ain't happening!  Thankfully the last row was empty and the sweet man sitting in front of us didn't mind the mess and smell of a head to toe outfit change - socks and all.  After that episode we couldn't make it back to our seats because the beverage cart was blocking our path so after more stepping on toes and knocking people's shoulders with the diaper bag, we made it back to the poop changing row where we stayed (lacking all electronic devices) for the remainder of the flight.  Joshua finally had enough climbing on me like a monkey and passed out in my arms through the landing, disembarking process, and woke up on the train to baggage claim.  

I know from the pictures it looks like he slept a lot, but that was the only time he slowed down enough for me to snap a shot!  For the 36 hours we were gone, he actually only slept about 10 hours total. The other 26 hours my Dad and I were chasing him around unless we were lucky enough to strap him in a seat of some kind.

In other news, we spent all day Wednesday at CHOA for a Hematology visit at the AFLAC clinic and then had to hang around for a few hours until our ultrasound appointment that afternoon.  The ultrasound showed Joshua's blood clot is gone!  But, it also showed a narrowing in the subclavian vein so the hematologist recommended he stay on a prophylactic dose of Lovenox which is one injection a day instead of two.  So that's a little progress! 

Today we visited an allergist in Athens for Joshua's initial skin testing.  He passed all the skin challenges, and combined with his previous blood testing, we can now confidently rule out anaphylactic allergies as a problem for Joshua - woohoo!  The not so good news is he definitely suffers from allergic collitis which is a tougher to diagnose condition.  We now have a referral to a specialist at Scottish Rite and the advice to see the Allergy Clinic in Cincinnati which is apparently top notch.  One more thing to add to our to do list while we're traveling to CCHMC.

Until next week and Trip #2...